Self-Reported Presence and Experience of Pain in Adults with Down Syndrome

Abstract

Objective: The aim was to examine whether the presence of pain (based on physical conditions and participants’ report) and self-reported pain experience in adults with Down syndrome (DS) differ from general population controls.

Design: Cross-sectional study of 224 adults with DS (mean age = 38.1 years, mild-severe intellectual disabilities) and 142 age-matched controls (median age = 40.5 years, mean estimated IQ = 105.7) in the Netherlands.

Methods: File-based medical information was evaluated. Self-reported presence and experience of pain were assessed in rest and after movement during a test session (affect with facial affective scale (FAS: 0.04–0.97), intensity assessed with numeric rating scale (NRS: 0–10).

Results: Compared with controls, more DS participants had physical conditions that may cause pain and/or discomfort (p = .004, 50% vs 35%), but fewer DS participants reported pain during the test session (p = .003, 58% vs 73%). Of the participants who indicated pain and comprehended self-reporting scales (n = 198 FAS, n = 161 NRS), the DS group reported a higher pain affect and intensity than the controls (p < .001, FAS: 0.75–0.85 vs 0.50–0.59, NRS: 6.00–7.94 vs 2.00–3.73).

Conclusions: Not all adults with DS and painful/discomforting physical conditions reported pain. Those who did indicated a higher pain experience than adults from the general population. Research into spontaneous self-report of pain, repeated pain assessment, and acute pain is needed in people with DS for more insight into pain experience and mismatches between self-report and medical information.

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